CA 19-9 Levels - What is High Enough to Cause Concern for Prognosis?

Hello @denip and welcome to the Pancreatic Cancer support group on Mayo Connect. Your concern over your husband's CA 19-9 level is certainly understandable. From your post, though, it does appear that this is a recent diagnosis and that he has just started chemotherapy. Is my understanding correct?

As I read your post, I was pleased to see that you mentioned that there doesn't seem to be any, "evidence of spread." I'm sure you are both pleased about that. Using chemo to shrink the tumor before surgery does seem to be a standard method of treatment. Please know, however, that if you have any concerns, or doubts about your husband's care it is always your right to get a second opinion. If you would like a second opinion, I would encourage you to go to a cancer center of excellence such as Mayo Clinic (here is the link for appointments, http://mayocl.in/1mtmR63). A university, or other research hospital is also a good place to get a second opinion.

That being said, I would like to invite some other members of this support group to post with you regarding their experiences with pancreatic cancer. Please meet, @howleegirl and @markymarkfl. @lvtexas and @kim1965. They will all be great resources for encouragement and support as you journey through this diagnosis.

How is your husband feeling now? Is he able to manage the side effects of the chemotherapy? How is his appetite?

Will you continue to post and let me know how you are doing?

Thank you so much for your warm response! My husband is in quite a bit of pain. His flanks have been irritated since he had an endoscopic biospy done a couple of weeks ago. He also just had his port installed this week and is uncomfortable with that. Treatments were delayed because of a hiccup but are set to start this coming Thursday.

There is a lot of adjustment at the beginning of a diagnosis, @denip. I hope that once the treatments begin that he will feel better.

We have many members who have had chemo, if you care to share the names of the chemo drugs he will be having, you might get some responses from members who have taken the same meds.

Yes, thank you! The regimen they are starting him on is oxaliplatin (Eloxatin), Irinotecan (Camptosar), Fluorouracil (Adrucil). One of these he will be sent home with to infuse over 48 hours. The other two will be administered in the treatment center at Duke University cancer center.

There are advantages and disadvantages to doing chemo first instead of surgery first. That's been discussed in several other threads.

I'm curious in this case about whether the chemo is really needed "to shrink the tumor" versus just learning about its behavior (response to chemo) and providing a systemic treatment that stops any microscopic spread.

Unless the tumor is huge, or identified as impinging on other organs/arteries/veins, it seems to me (with no medical training) that the standard Whipple surgery could remove most tumors of reasonable size in the head of the pancreas.

How often will the chemo be administered? You will be getting some data during the treatment about how your husband is responding to treatment. My Folfirinox (4 drugs) before surgery was every two weeks. My hometown oncologist tested CBC/CMP every two weeks before treatment, but opted to check CA19-9 every four weeks. (I had my primary care doc order repeat/serial CA19-9 testing at an outside lab so I could get more realtime data and a noise-reduced trend of the response).

In your husband's case, with only 3 months of chemo before surgery, I would request CA19-9 testing with every other blood draw just so you get enough data points to see a clear trend.

They will probably do another scan (CT or MRI) to check for spread before the surgery, as well as see if the tumor is shrinking or invading blood vessels, and that will be another confirming/negating piece of data on how the tumor is responding to treatment. If it has spread, they may elect to not do surgery. If it has grown with no evidence of spread, they may elect to do surgery sooner or switch to a different chemo. After surgery, they will get a first-hand look at the tumor and identify how much remains alive versus dead, and use that to grade the response to chemo. Since they are already planning to do more chemo after the surgery, that grading may also guide them as to whether they use the same drugs or switch it up.

Make sure the surgeon/hospital are planning to save plenty of tissue from the surgery. If you wind up with a recurrence and need second opinions, everyone is going to want a piece of that tissue. Ask them also if they can pre-plan to do a test like Signatera with some of the tissue. That is a DNA-based blood test that looks for evidence of microscopic tumor DNA after the surgery, and gives them another piece of data to cross-reference with CA19-9 and imaging results.

There is also a possibility of using cells from your tumor to create a custom "vaccine" or other treatment that trains your immune system to attack cells with matching DNA directly. The more tissue they have available, the better.

As for the 48-hour take-home pump, that can be rather annoying, especially if he's already fatigued and the pump interferes with sleep. I've posted some of my home hacks for dealing with that pump in other threads, but basically it hangs around your neck like an albatross, and doesn't follow well for side sleepers like me who toss from one side to the other. Securing it to my chest under a tight-fitting lycra shirt held it in place regardless of my sleeping position. There are also newer elastomeric pumps that are much smaller, and possibly also disposable. Ask the good folks at Duke for their recommendations about those.

It's definitely not an easy road, but not as bad as it all sounds at first. Since this was caught reasonably early, there's a lot of reason to have hope. I wish you both the best!

I’m so sorry to hear this. Sending you support.

I’d be interested to find out why they are starting with chemo. Is the tumor not receptacle because too large or situated near artery? Or are they trying to bring the CA 19-9 down under 200 (there’s some evidence that this is correlated with better surgical outcome)? If I were confident there isn’t spread, personally I would want to have surgery asap. If in doubt I’d consider getting a second opinion.

Some basic info about CA19-9 measurement:

CA19-9 is a relative number and not compatible to other patients values. While you may consider 2,000 high in your situation, it would be low for someone whose measurement is 800,000. Looking at it as a percentage increase/decrease might be a better way in comparing one’s own values.

When one is undergoing chemotherapy, CA19-9 will tend to increase during the first several administrations of chemotherapy as it kills cancer cells as well as healthy cells. If one is starting out with a large tumor burden, there is more surface area for the chemo to come in contact with and that results in the CA19-9 increasing during the first early treatments. A spike in values is common. As the tumor burden is reduced, there is less available CA19-9 to be released into the blood and the value drops.

A positive prognostic factor is where the CA19-9 returns to a normal range prior to surgery. Depending on the test method used, the range can be 0-35U/mL (Roche Diagnostics) or 0-37U/mL (Abbott Diagnostics).

Here is an informative YouTube video made by pancreatic cancer survivor David Dessert explaining CA19-9 values and causes.
https://youtu.be/Fq4UKsSLTMo

I so appreciate your very thoughtful response. The docs say that at the tumor at 3.5 x 2.9 cm (3/136), the tumor is on the larger side of the border line where they can remove it.

His medical oncologist told us she would look at the CA19-9 about every other bloodwork, which is about every month as his treatment plan is every two weeks for chemo until basically the end of the year. At that point they will do more imaging and such to determine whether or not the tumor has shrunk or changed.

We had not thought of having tissue saved from the removal surgery! Thanks for that suggestion. Seems like an important thing to do for the reasons you mentioned. How would the hospital provide that to a patient? On a slide? And how does one preverse that tissue?

Thanks for the tip on wearing a snug fitting shirt while carrying the infusion pump. My husband has been struggling with sleep and wearing the pump for two days is a real concern for him.

I think at this point his biggest source of anxiety is not knowing what is ahead. Once he has gone through a couple of treatments, the process will become routine and anxiety will ease. Sad to think that something like this could ever become “routine”!

Did you have a bad reaction to the Folfirinox regimen? I hear mixed things, but most not good in terms of side effects.

Thanks again and wishing you continued success in battling this beast.

Hey, thanks so much for your response. The tumor was measured at 3.5 x 2.9 cm (3/136). They said it is slightly larger than where they would attempt surgery as an initial treatment.

@denip , You're very welcome.

Too late to edit my initial comment, but there's a typo in there: I would ask for the CA19-9 to be tested with EVERY blood draw (every two weeks) rather than every other draw. It's not the end of the world either way you go. Since my Folfirinox went on for 6 months before surgery, there were enough data points to see the trend that my cancer was barely under control, and getting imaging every two months confirmed it (as did the outside labs I was getting on my own). I would have advocated for a different chemo drug or for surgery after 3-4 months, knowing what I know now. But you'll be getting confirmation (by imaging and surgery) within 3 months, which I think is better than waiting.

I can't say I ever had a "good" reaction to Folfirinox, lol, because in general it's not fun. The fatigue factor is pretty much unavoidable, but anything you can do to maximize sleep quality, nutrition, and hydration will help. I felt nauseous several times but never vomited, and I had most of my diarrhea during the first two treatments, during which I was still recovering from the EUS/ERCP/biopsy and a subsequent infection. I added a preemptive Imodium capsule before each treatment afterward, and diarrhea was never a problem after that. Around the 4th or 5th treatment, my sinuses began to unload about two hours in, and sinus headaches definitely add to your fatigue. After the 5th treatment I was wiped out and dehydrated, blood sugar dropping (I became diabetic when my pancreas began to fail), tried my first and only MMJ gummy, and started blacking out with BP down to 80/40 and took a 911 ride to the ER. After that, improvements in my sleep situation, hydration, nutrition, and a Zyrtec for my sinuses kept me on a pretty even course through the 12th treatment.

As far as storing tumor tissue goes: The hospital performing the surgery will save some. Their pathology team will probably look at a piece during your surgery to see if it's cancer-free at the margins. They'll send the surgeon back to cut more if it's not. Then they'll probably have their pathologists look more deeply at it afterward, and/or send it off to another lab for analysis.

The questions to ask your team are for details about the above: Are they going to have full NGS (Next-Generation Sequencing, i.e., advanced DNA and other molecular analysis) done on it, and if so, by whom? There are a lot of companies in that space now, but I'm only familiar with Natera. My surgeon sent tissue to them, from which they built the "Signatera" ctDNA (circulating tumor DNA) blood test "filter" that checks my blood periodically for the presence of matching DNA. That's not automatic, so you have to request it. It's quite helpful to monitor your status after surgery, because it could be the first sign of microscopic residual disease.

The mechanics of the actual tissue storage are another consideration. In most cases it's frozen and stored on slides amenable to viewing under a microscope or sending off for additional DNA analysis, but the cells are no longer in a "live" state.

I spoke yesterday with a rep from https://storemytumor.com/ whose process freezes the tissue in a way such that it can be thawed again with about 87% of the cells returning to a "living" state. From this, they might have better tissue to develop new drugs from, but they can also do test-tube based sensitivity testing to other drugs, where they expose different cells to different drugs and see which is most effective at controlling/killing them.

StoreMyTumor (SMT) provides a collection kit and instructions to the surgeon for how to package it and ship immediately after surgery. SMT's one-time fees are around $5k-$6k US, plus $89/month for storage. I'll be talking to my surgeon about that later this week, and will post if I learn anything new.

Your husband will likely be off treatment for at least 8 weeks (4 before surgery and 4 after) in order to ensure stability (blood counts) and good healing. It's not something I hear of being done (especially first-line), but as soon as tumor tissue is removed during surgery, labs could theoretically begin testing that tissue against various chemo drugs to decide which is best before the post-op treatment begins. They'll probably just decide from the post-op pathology (and last presurgical imaging and CA19-9) whether his 3-drug combo actually worked or not. If it did, my guess is that's what they use the same for the post-op adjuvant treatment. If not, they'll just go with the other SoC (standard of care) recipe based around gemcitabine. Still, I would advocate for making the decision based on all knowledge possible to obtain, including any hereditary or environmental mutations involved. Those, along with sensitivity testing, might identify whether the original chemo, or Gemcitabine+/-Abraxane+/-Cisplatin are the better options. If those can't kill cells in a test tube, they probably won't kill them in a body, and that might direct them to look sooner rather than later at clinical trial drugs.